Thursday 21 April 2011

Media Warrior

So, yesterday saw a complete spoon failure from Suey.

What with the pox, a hubby with a bad back, my Dad bedridden with a nasty infection and my Mum playing ambulance bingo for heart problems, my body decided enough was enough. I had no choice but to lay on the sofa and order a pizza for my boy's lunch.

I woke up this morning bleary from much needed sleep to answer the phone to BBC Radio London and the Vanessa Feltz Show. "Would I be on as an "expert" discussing the morning's headlines about "Benefit Scroungers?" Waking up a little more quickly than was good for me, I jokingly asked which particular kicking we were getting this morning? Either way I suggested she must have a copy of the Mail or the Express in front of her.

She spluttered with laughter and as I got the stories up on my laptop, she talked through them with me. Yet again, a list of "fake" conditions such as diarrhoea, drug and alcohol addiction, "blisters" "headaches" "stress" and even "nail conditions" were listed (funnily enough, not a peep about cancer, parkinson's, schizophrenia, bowel disease, heart failure, MS.....)

There is a little known spoonie phenomena called "adrenaline flood." When your body just can't take any more but you need to get on, fight or flight responses, formed over millennia, flood your body with adrenaline to take the place of the energy that "normal" people rely on. My hands started to shake uncontrollably, my heart raced and jumped in my ribcage, everything seemed clearer and sharper.

As arranged, the phone rang at 9.40 and within seconds I was live on BBC Radio London. Although the time passed in a blur, it was a decent slot, a good chance to actually go through some of the issues and inaccuracies in the newspaper articles.

The headline in fact screamed "SCANDAL OF 80,000 ON SICKNESS BENEFITS FOR MINOR AILMENTS....INCLUDING DIARRHOEA", a gift to an "expert" like me with bowel disease. I started by pointing out that my "diarrhoea" might be due to the 32 growths I've had removed from my guts, the 7 major operations that have saved my life and the loss of half my bowel. If we cherry pick conditions or symptoms to prove that all claimants are scroungers, we ought to be very clear what they relate to. 

I made several other points about these "fake ailments" - "blisters" that may well be due to conditions like Epidermylosis Bullosa where a sufferers skin blisters and tears from the lightest touch, that "asthma" affected 5.4 million people in the UK, yet only 30,600 claim support from the state to cope with it. My nephew died of asthma early this year. He was 11 years old. 

I made the point that surely we should actually be discussing the fact that the assessments used to determine whether someone is "fit for work" have been found unfit for purpose by the professor who designed ESA, the government's own advisory board, the CAB, Compass and the Harrington Report? Surely we should be discussing why 40% of decisions made by ATOS go to appeal with up to 80% overturned as inaccurate? Surely we should be more worried that 100s of people are being found "fit for work" every week who have severe, long-term, degenerative conditions that will never improve? That tribunals and assessments are causing great distress to people who are "truly vulnerable" - the very people the government claim they will protect? 

Finally, we talked about The Broken of Britain and my very own little blog and how we work very hard to offer facts and alternatives to the government which are roundly ignored. That we can work for weeks, producing reasonable, constructive evidence, that can all be undone in one morning when the Mail, Express and Mr Grayling get together to offer yet another three-pronged assault on the sick and disabled.

I asked how it helps the debate one jot to keep focussing on cheats and skivers? When someone with a complex, variable condition presents themselves for "assessment" how does it help the assessor to make a reasoned decision when they are told anyone with "blisters" or "headaches" or "asthma" is just faking? 

I'm very glad, that at the very least, we are finally getting a "right to reply". It means very much to me to be able to speak on the same forum as ministers such as Mr Grayling and to do what I can to reverse some of the hate and ignorance they seem determined to stir up. 

The fact we are now governed by ministers prepared to stoop to these levels shames me. I hope it shames you too. 

UPDATE : The brilliant Broken of Britain, posted the link to my interview
My bit starts at 37 mins


  1. There's a hefty chunk of double-counting too, by the looks of it. I'm mentioned several times. I have IBS, severe eczema, ME/CFS and asthma.

    So, that’s counted once for the runs…
    …once for the blisters I get with pompholyx…
    …once for my cough with asthma…
    …once for dizziness…
    …once for headaches (and migraines)…
    …once for lack of co-ordination…
    …and I’m a bit tubby, so once for being overweight too.

    Me, one person, in that article become SEVEN people!

    We also don’t know how many are being counted for secondary conditions – ie, conditions that aren’t the cause of your claim, but have had to be put on the form for completeness. For example, an MS sufferer who also has bad acne would be counted as someone claiming for acne…

    That article is simply a 2 Minute Hate.

    Armchair Atos Assessors.

  2. That's great news sue being on the radio and giving the true accounts of sickness and disability

    The prime minster was also on the TV having a go at us as normal in blaming us for our Ill's
    Thousands claim incapacity benefit for addictions

    Mr Cameron said many people 'had been left for dead' by the last government

    More than 80,000 people in Britain claim incapacity benefit because they are alcoholics, drug addicts or obese, the government says.

    The Department for Work and Pensions said more than a quarter of those had not worked for a decade.

    David Cameron said many taxpayers would object because they felt recipients should be "people who are incapacitated through no fault of their own".

  3. As I already mentioned on TBofB website, the presenters completely stunned silence where she actually lost her professional veneer was a very telling moment! "Just diarrhoeal" sounds like nothing much until you say "I've had half my bowel removed". The DM (and sadly the BBC as well) took ONE symptom out of what is probably a huge list of diseases and made an article out of it to get people fainting in coils. I posted a reply to BBC and Yahoo, and - as if I expected less - neither one made it into the comments section.

  4. oya i hope your not fat as David Cameron wont like you ?
    He probably wont like me either as i am very thin
    Anyhow he's not on our guest list to visit so it doesn't mean much

    There a very fussy lot wealthy conservatives with standards in the uk overall very low in there eyes i have always been very surprised that they even wont to live here

  5. Well done sue for pointing out the issues that surround people with disabilities and the complete farce that is the WCA. Its just a shame these politicians cant have a real time debate about it all, but we live in hope


  6. FFS, no-one *chooses* to have a drug addiction. Most people who do have been driven to desperation to drown out the demons in their head or fill the void in their soul; when you're in that much pain, anything starts to look like a good idea.

    Great interview, Sue. It was interesting when the presenter asked "how would you like people to look behind the headlines?", because there's little way of answering that without saying "well, just don't believe anything the Government or media say, ever, and do your own research" or in other words "start by assuming that the headlines are bollocks".

  7. I shudder to think of the spoon deficit I'd build up doing half the campaigning you do. Just putting out an article or so a week can flatten me. And then you run family on top and keep doing both even in the midst of near crisis -- kudos! And if it means the odd day wiped out on the couch, then that's not failure, simply the cost of fighting the good fight.

  8. The BBC article must have received a load of complaints as well as it has been totally rewritten and a new one posted - this time with no comments being allowed.


  9. Great article. As I fellow Crohn's suffer and sometime politico, it's great to see someone able to take the conservative (big 'C' or small 'c', always big on bigotry these days it seems) spin machine to task and actually manage to not get completely ignored. I've been particularly concerned lately about the rather Dickensian terms in which the debate is being framed, and it's good to see someone able to land a few punches for the good guys.

  10. Why doesn't David Cameron lead by example and stop overeating so I don't have to see his fat, overprivileged face that looks like it was made out of dough all the time on my TV.

    The bastard looks like the Stay puft marshmallow man out of ghostbusters.

  11. Anon
    They all get like that (remember Gordy).

    I am in awe of this Sue phenomenon and I now realise I've been had, as there are clearly triplets taking turns to write each amazingly well-written masterpiece.

    Shocked and Awed I am.

  12. Aww, Howard, shucks.
    I have a big silly grin :))))

  13. I wrote a long post and Blogger swallowed it.

    Congratulations on the radio, stuff stuff stuff, that was it.


  14. I have just listened to your radio broadcast sue and must say what a splendid performance that was and showed you know everything about these issues of how the sick and disable are feeling and the hurdles that they have to face in their daily lives

    I just hope that IDS and the prime minister get to hear this broadcast as well as they will learn in ten minutes what they have failed to understand in there lives so far

    Well done once again and keep up the good work and remember I'm from the bank of England and just to get me to praise anyone is no mean feat i can tell you

    You missed out on those like myself with loss of liberty from the DWP because of severe restriction in order to get the benefit in the first place but none the less you have done well and it's a pity i have been unable to help you but with my overall health poor especially my weight being well under

    Everyone who is looking after me keeps telling me to switch off which is easier said then done but none the less i have to try otherwise i would end up in hospital

  15. Nice job. I love this post. Nice writing.
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